The present invention relates to the management of personal health information or data on individuals. The invention in particular relates to the assembly and use of such data in a longitudinal database in manner, which maintains individual privacy.
Electronic databases of patient health records are useful for both commercial and non-commercial purposes. Longitudinal (life time) patient record databases are used, for example, in epidemiological or other population-based research studies for analysis of time-trends, causality, or incidence of health events in a population. The patient records assembled in a longitudinal database are likely to be collected from a multiple number of sources and in a variety of formats. An obvious source of patient health records is the modern health insurance industry, which relies extensively on electronically-communicated patient transaction records for administering insurance payments to medical service providers. The medical service providers (e.g., pharmacies, hospitals or clinics) or their agents (e.g., data clearing houses, processors or vendors) supply individually identified patient transaction records to the insurance industry for compensation. The patient transaction records, in addition to personal information data fields or attributes, may contain other information concerning, for example, diagnosis, prescriptions, treatment or outcome. Such information acquired from multiple sources can be valuable for longitudinal studies. However, to preserve individual privacy, it is important that the patient records integrated to a longitudinal database facility are “anonymized” or “de-identified”.
A data supplier or source can remove or encrypt personal information data fields or attributes (e.g., name, social security number, home address, zip code, etc.) in a patient transaction record before transmission to preserve patient privacy. The encryption or standardization of certain personal information data fields to preserve patient privacy is now mandated by statute and government regulation. Concern for the civil rights of individuals has led to government regulation of the collection and use of personal health data for electronic transactions. For example, regulations issued under the Health Insurance Portability and Accountability Act of 1996 (HIPAA), involve elaborate rules to safeguard the security and confidentiality of personal health information. The HIPAA regulations cover entities such as health plans, health care clearinghouses, and those health care providers who conduct certain financial and administrative transactions (e.g., enrollment, billing and eligibility verification) electronically. (See e.g., http://www.hhs.gov/ocr/hipaa). Commonly invented and co-assigned patent application Ser. No. 10/892,021, “Data Privacy Management Systems and Methods”, filed Jul. 15, 2004, which is hereby incorporated by reference in its entirety herein, describes systems and methods of collecting and using personal health information in standardized format to comply with government mandated HIPAA regulations or other sets of privacy rules.
For further minimization of the risk of breach of patient privacy, it may be desirable to strip or remove all patient identification information from patient records that are used to construct a longitudinal database. However, stripping data records of patient identification information to completely “anonymize” them can be incompatible with the construction of the longitudinal database in which the stored data records must be linkable patient by patient.
Consideration is now being given to integrating “anonymized” or “de-identified”. patient records from diverse data sources in a longitudinal database, where the data sources may employ different encryption techniques that can hinder or prohibit accurate longitudinal linking patient records. Attention is in particular directed to efficient processes for integrating multi-sourced longitudinal data in a manner that ensures the protection of an individual patient's privacy and complies with industry privacy regulations.